8 Things Every Philly Special Needs Family Needs to Know

By Lisa Lightner

I was at a conference a few years ago, and sat with a woman who, in the course of our conversation, told me that her region has 1 vision teacher to serve 4 counties. I was floored! Our IU has almost a dozen TVs I think! I didn’t realize how much I was taking for granted, as far as living in this area.

I love living near Philly. Living in a large metropolitan area gives you so many more resources, not to be taken for granted. If you are living near here and either you or your loved one has disabilities, consider yourself lucky. I think it is one of the best areas of the country to live, as far as resources and programming. Here are 8 things you may not know about living near Philadelphia if you or someone you love has a disability.

1. We actually have three great children’s hospitals. Sure, the media loves to swoon over CHOP, and they are great. But we also have Nemours/duPont in Wilmington, DE, and St. Christopher’s in northern Philly. For some of the rare conditions, you might find a home at one of the other places besides CHOP. For example, there is a cluster of dup15q families at duPont, due to a former researcher there, and I heard that there is a cluster of Batten Disease families at St. Chris'. You also can access different services at each — more on that later. All three have a Ronald McDonald House should you need it.

2. Get on Medicaid and get your PA Access card. The PA Access card will give you free and reduced admission at many of our region’s museums and attractions. PA has a loophole so that MA for disabled children is not based on income. The Art Reach and Access programs are a must — I love them!

3. PA has wraparound. Not all states do, but we do, and it’s a godsend for many families. You must be on MA to access it, so do that step first.

4. Finding a special needs dentist takes patience. It’s not impossible, but it takes patience.

How to find a special needs dentist near Philadelphia:

This will depend on your child’s unique needs, but here’s how to get started...

Find your local pediatric dentist and call and ask if they serve children with disabilities and tell them your child’s needs. You may not have to leave your local community.

Next, the following places:

St. Christopher Hospital for Children

CHOP does not have dentists, they send you to UPenn, so you can try there.

duPont/Nemours does not consistently have a dentists, so if you are in that region, ask your local pediatric dentist if they have privileges there, should the patient require anesthesia. Other dentists have privileges at area hospitals like Christiana and Phoenixville, so ask your local dentist.

Special Smiles in Fishtown, but they will only see you once a year.

5. We have a disability pride movement! This year the summer event took place June 17.

6. IUs are a uniquely Pennsylvania thing. Pennsylvania has a rich history as far as special education, and with it comes IUs. They are unique to us, so if you mention those to friends out of state, they likely won’t know what you’re talking about.

7. We have a plethora of civil rights agencies at our disposal. We have the Education Law Center and PILCOP, if you need a civil rights attorney. We have the actual Office of Civil Rights in Center City. We have more Arc agencies than I can count. We have HUNE, the PEAL Center and Pattan. We also have both Senators with an office in Philadelphia and Senator [Bob] Casey’s office staff are the bomb! They will help you if you have a particularly difficult issue and he is a huge supporter of disability rights and programs. If you need assistance or legal help, you can likely find it (at low or no charge!) very close by.

8. If you can dream it, you can likely do it. I have seen some amazing programs out there for our kids and families.

PT and OT on a horse (Quest Therapeutics).

Learning social skills via theatre (Acting Antics).

Pet therapy in your own home with your own pet (PAWS for People).

Getting PT, OT or social skills via working on a farm (Barn at Spring Brook Farm).

Special seating and equipment and assistive technology clinics where you can go to get your child fitted with what is best for him or her (duPont/Nemours).

Inclusive girl scout troops and Baden-Powell groups; I’ve even heard of a special Pinewood Derby in Bucks County.

Special free days or reduced admission days at attractions like Sesame Place (Variety Club of Philadelphia).

Hand holding and guidance for your child’s first college course at West Chester University (CCIU Aspire Program).

If you are looking for something, keep looking. I have seen so many phenomenal and innovative programs in this area — things that living in a large metropolitan area can offer because of our resources. If you think, “nah, that’s crazy, probably doesn’t exist…” think again!

Don’t stop looking, asking and googling. It’s very likely it might be out there.

Lisa Lightner is a Chester County, PA mom of two. This post was adapted from the blog A Day in Our Shoes, which she co-authors. It provides support, resources and advocacy services for parents of children with special needs.